CT scan Para aorta nodes adnormal

Hi Jennie

This cancer is just a gift that keeps on giving !! Sorry to hear they have picked this up but knowing you it’s just another bump in the road ! 

will have everything crossed for you take care Tricia xx 

Hello, how are you Tricia ? Thank you for your positive post.. I feel I have been here years and years, I came on here just over two years ago, not long at all.

Hi Jen, it’s been almost 10 months since we last spoke how fast has that gone! Really sorry to hear you’re dealing with the complete dread of waiting around for further scans and MDT discussions! 

I can’t say so far I’ve any abnormal nodes, but I am back on treatment which for reoccurrence for some lung nodules and liver nodules. The chemotherapy treatment I am on currently is CAPOX along with immunotherapy Pembrolizumab, so far more manageable than FLOT! 

All the best Jen!

I’m well thank you Jennie first post op CT scan clear !    I do hope things go well for you ! Xx

Hello Rich

10mths wow, time does fly, that's why I keep thinking it has been longer. Soz to read that you have lung and liver nodules, you sound positive which is all we can be, I cling to HOPE like Velcro but that took a knock with the call.

PET scan tomorrow, result this Friday. 

How did they pick your nodes up, are they airing on the side of caution?

So how do you have the Chemo? drip through PIC line? how many types of chemo?  how is the immunotherapy given? Is anything worse than FLOT, my stomach can turn just thinking about it. 

Hi Jennie

So sorry to hear your news, it’s another roller coaster of emotions to deal with when hope takes a step back. We’re going through a recurrence with the tumour growing back at the new junction after 2.5 years of being NED. Husband has just started CAPOX and permbrolizumab (still can’t say it or spell it without looking it up!!) I’ve read lots of good responses to this treatment so we’re feeling more hopeful than we were 
wishing you lots of luck, keep us posted

Jane x

Just noticed that  you said your husband has just begun treatment with Capox and the one beginning with P!! Sorry haven’t got the spelling into my head yet. That is the regime mine starts on Thursday. I don’t know much about it, we are meeting nurse’s Wednesday so perhaps will then. I hope he does well. I hope the side effects aren’t too evil! Wishing you luck too x

Hello Jane

Thank you for responding. Sorry that your husband has a reoccurrence after 2.5yrs, this cancer is so harsh, did you husband start to get symptoms that led to the recurrence or was it a routine screen? 

I will get my results on Friday, PET today to see what lights up! I have an enlarged node in the belly button region, so my head is going kidney? adrenal gland which I only have the right one left, they removed the other one this time last year, hence my 3 monthly scans, my cancer doesn't seem to want to go to sleep not even for a year.

Ritch said that the treatment you mentioned is not as harsh as the FLOT would your husband agree, Are they pills? if so how big?

Yes I have read lots of good things about the treatment and they are developing new methods all the time. 

I will let you know

Take care Jennie 

Hi Jennie,

Sorry to hear that you’re not quite out of the woods yet. 29th Feb 2024 does feel like a long time ago, doesn’t it? It’s been a hell of a journey for you but hopefully you’ll get closure from it all soon. Does make me worry sometimes about what’s going on inside as I don’t get any routine scans (have only had one since the op). Sarong trial wasn’t even on offer here. Let us know how you get on with the PET scan. CB

Hi Jen, I understand clinging to hope like Velcro. I even got a tattoo on my hand which says ‘never lose hope’ so I am constantly reminded!

All the best for your PET scan today in hopes it’s something other than reoccurrence!

My nodules was picked up after a routine 12 month scan, they’re to small to biopsy and confirm that it’s cancer especially in the liver where the radiologist marked ‘unusual appearance for Adenocarcinoma’. They do think it’s likely reoccurrence so thankfully the team decided to start treatment rather than wait around.

My first CT scan there was lung nodules, but few days before I had Covid but nothing was showing infection to without biopsy leaning towards metastasis. Nothing show here for the liver. Following 2 weeks later the PET scan picked up something in the liver then lead to a MRI etc, then eventually the decision of not waiting around and get started Asap so we up and left to Dubai and had a amazing time before starting treatment.

I’d no symptoms of any of it at all which was the scary part and likely still wouldn’t know now without that scan. 

The CAPOX chemo I am on now lasts 3 weeks a time, the infusion is the Oxaliplatin thankfully now they’ve worked out how to administer without a PIC line since I had FLOT! So day 1 is the Oxaliplatin infusion, meanwhile for the remaining 3 weeks taking the Capecitabine tablets morning and night, the immunotherapy is given aswell before the Oxaliplatin. 

The Capox is scheduled for 6 cycles, and immunotherapy for 2 years. Unfortunately yesterday I had a reaction to the oxaliplatin but mentally and physically I was totally unprepared after having a bug last week. They advised having a week off last week when they did my bloods to recover from it but as per I didn’t listen and caused havoc to have the treatment earlier instead of giving myself a few more days to recover! So now I am going back in tomorrow for my remaining Oxaliplatin infusion. 

I can honestly say it’s not as bad as FLOT, I’ve just done myself over this cycle !